Rescuing my son: Unhealthy toxicity levels

Fighting back Sensory Processing Disorder is not easy, specially because it is a hiding disability. It is something you can not see. I am informing my self, as much as I can, to find the best ways to help Tommy to surpass this challenge. I feel very confident with the team of professional that are working with us. We are using sources, which are proven by scientist research, to formulate Tommy's wellness plan. I will explain in separate post the urine test that was done to Tommy to know his neurotransmitter levels. The same test also showed that Tommy's toxicity is extremely high to the point it is unhealthy. His nutritionist have recommended a detoxification treatment, based on a medical food to support the liver to realize toxins. It is the stronger treatment available that can be given to a child, but it is safe.

Natural ways to detox

• A person, adult or child, should drink half of the body weight measure per once. For example: If I weight 104 lb, I should drink 52 oz of plain water per day. Water has ions that act like magnets that attract toxins and take them out when we excrete liquid waste (urine and sweat). We reviewed Tommy's water intake and he wasn't drinking enough water. We are working on making him to drink plain water. Tommy is getting the support from his teacher in this process, she is making sure he drinks water at school every day. At home, we are doing everything to encourage him to drink plain water. He doesn't like water, so he is giving us hard time, but if we sing his favorite songs while he drinks or encourage him to drink water by us drinking water with a water bottle, then he complies. I am keeping a water count per day, so he meets his daily water intake. There are days he enjoys to drink water and days he doesn't want to drink much, but I still find ways that he meets the amount of water he should drink. This is a huge improvement because before he didn't want to drink plain water at all.
• Epsom salt bath recommended by his nutritionist. Epsom salt bath benefits have been proven by scientist research. Tommy's epsom salt bath is once a week. I just put one cup of Epsom salt in the bathtub filled with warm water. While the bathtub is getting filled,  the bathroom door is close to raise the temperature in the bathroom, so it makes Tommy sweat and realize toxins. Meanwhile, the body is also absorbing the Epsom salt while he is soaked in there for 10 minutes. 
• Increasing exercise routine. Tommy and I are physically active, at least for 15 minutes, to the point we sweat. In this way, Tommy naturally realizes toxins, increases endurance and gets body awareness. The good thing is Tommy sweats like crazy, so it doesn't take long to make him sweat. I also offer water while we are doing our routine, which is basically jumping and dancing while we listen to music such as, Eye of the tiger or I gotta feeling. We are having fun!

Here is Tommy drinking from his favorite water bottle.

This bottle has a special meaning, his private paid OT gave it to him.

This the only container Tommy accepts to drink water.

As I said, sensory processing is hidden disability, but not invisible. The child will always show the sings, but as a parent, you should find a good team of professionals who will lead you to the right and safe treatment for your child. We should be councious that our kids with Trisomy 21 may have a liver and kidsneys that may work slower when they have to realize toxins. A doctor won't tell you this, I figured it out reading sciencit research about people with Trisomy 21.

It makes sense to me now the reason his sensory issues got out of control, Tommy got loaded of strong medications during and after the hospitalization. Medications are good, but they are full of toxins. So they altered his biochemical balance. His body may still be working on getting toxins resulting from all these medications, plus the toxins he naturally gets every day. I will post in the coming months, when we finish the treatment, about differences/improvements we have noticed in his sensory processing issues and what are the results when we retest.

The Sky is the Limit!

Rescuing my son: Checking for Non-anemic Iron Deficiency

"What your doctor won’t tell you (referring to your child with Trisomy 21)... iron is essential for growth, development, and a healthy immune system. Iron deficiencies are proven to affect IQ and focus in children. Since iron excess can lead to enhanced damage through oxidative stress, it is important to be tested for iron. Measuring blood levels of ferritin is the best way to evaluate how much iron is stored in the body, and whether or not you are deficient." Nutichem.com


Iron excess in kids with Trisomy 21 is common, but it is not always the case. Trisomy 21 is a genetic disorder and not a disease, which means the ways the syndrome will affect the person will vary due to the combination of multiple inherited genes and the exchanged genes by the extra chromosome. So there are also many kids with Trisomy 21 with low iron levels and animina. Therefore, testing is the best way to check a child with trisomy 21 iron levels.

Borderline iron levels is known as depletion or non-anemic iron deficiency. When a person has non-anemic iron deficiency it means the person could be at risk of developing anemia, so iron supplementation may be recommended. Because many kids with Trisomy 21 have hypothyroidism, there is a higher risk for these kids to develop iron depilation leading to anemia. As well as, if the child has food allergy or sensitivity, they are at a higher risk of non-anemic iron deficiency because the gastro intestinal track it is not absorbing the adequate iron intake.

Non-anemic iron deficiency can cause problems. According to the study 'Women with low, but not anemic, iron also have impaired physical performance', done by the Cornell University in New York, has shown that "iron-depleted women had lower physical work capacity, and their performance was related to the amount of stored body iron... Other researchers have recently reported that moderate iron deficiency also compromises memory and verbal learning in teen-agers."  If non-anemic iron can cause low physical performance in an adult women, it makes me to conclude, it should affect in a similar way to a young child's body that it is still  developing, but even more to a child with Trisomy 21, who is already predisposed to have issues with physical performance and memory lost. 

Iron and Oxidative Stress
Because of the recommendation from the lab where we get Tommy's vitamin, and after talking to his nutritionist, we tested Tommy for iron levels. The results came back showing "borderline iron levels", which means, he is just a little bit underneath the normal level. Therefore, it has been recommended iron supplementation by our local Down Syndrome Clinic and Tommy's nutritionist.

Normal levels of iron are necessary for the body to get adequate level of micronutrients, but its accumulation lead to toxic levels that generates oxidative stress. So iron supplementation should be regulated to avoid high levels of iron. Oxidative stress develops at a faster speed in our kids with Trisomy 21 than in the typical population. Therefore, monitoring our son's iron levels has become part of our wellness plan to keep him healthy.

What is Oxidative Stress? According to Enzo Life Sciences' website "Oxidative stress is increasingly implicated as a possible underlying pathogenic mechanism in a wide range of diseases such as asthma, atherosclerosis, cardiovascular disease, diabetes, cancer, and Alzheimer’s disease. It results from an imbalance between the production of reactive oxygen species (ROS) and the system's ability to detoxify the reactive intermediates or repair the resulting damage."

Oxidative stress under control

1. Detoxification methods to prevent iron and toxins accumulation. Quilation has been recommended by the physician is in charge of Tommy's nutrition. Currently, we are doing a detox treatment and epson salt bath. We also incorporated kefir beverage in Tommy's diet because kefir has anti-oxidative components to keep oxidative stress under control, which has been proven throughout scientific research. We are going to focused in detoxification for the following months because there is high concern about neurotransmitter levels in Tommy's test results, that show extremely high levels of toxicity, which means his body is not flushing the toxins properly. The natural process for the body to flush toxins in a person with Trisomy 21 is slower than in a typical person.
2. Monitoring Oxidative stress through blood work or urine test. Iron is not the only factor that increases oxidative stress in our kids with trisomy 21. Oxygen quality intake is also other way oxidative stress can raise in our kids. Many kids with Trisomy 21 are mouth breather and mouth breathing quickly releases huge quantities of carbon dioxide. Therefore, a way to check for oxidative stress is with a Basic Metabolic Panel (BMP). This test is a set of 8 test to check sugar (glucose) and calcium levels in the blood, as well as, the kidneys function and body electrolyte and fluid balance. So this test give a general information about how the body is performing, which also includes a test for carbon dioxide levels. If the carbon dioxide it is too high, their is a high risk for oxidative stress. We already did the test and Tommy's BMP came back normal. Right now there is not  a big concern about oxidative stress. Maybe in the future, we will do a test for oxidative stress as part of our wellness plan to keep Tommy healthy if it would be a concern.

Our Experience
As soon as, we began to supplement with iron we saw a big change on Tommy. His endurance has dramatically improved, he has became more physically active. His attention span has also improved. So supplementing with iron, it is helping his body and mind more than what I was expecting. 

We are supplementing iron through food and supplement. The iron supplement we are giving to Tommy has Vitamin C and Vitamin B12, because they are essential for iron absorption. We are also providing a balance diet to him with food rich in vitamin C and Vitamin B12, so he can get most the nutrients he needs from his food, but he is in stage he doesn't want to eat much at dinner time. So supplementation is recommended for him.

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Enzo Life Sciences is a leading manufacturer of high quality reagents, kits and products supplied to scientific researchers in academia, clinical research and drug discovery. With direct sales operations in US, Switzerland, Germany, UK, France and Benelux.

Rescuing my son: Finding answers

After confirming with the blood work, my son has food sentitivy due to the gut (Intestine) is not working properly, I had a lot of questions about this issue. How did this happen? What cause his gut not working properly? What happened to the good bacteria? What can cause gut inflammation?To find answer to my questions, we searched for possible medical causes by going through our son's medical history.


Finding answers

Was Tommy previously tested for food sensitivity or intolerance?

Yes, he was tested in March 2010 because we are very proactive in monitoring Tommy's health. He was tested for gluten sensitivity and the test came back NEGATIVE and his levels were perfectly normal. We wanted to make sure everything was alright because some family members have Celiac and kids with T21 are at a higher risk for Celiac. Tommy's gut was working propertly previous to the hospitalization (January 2011). 


What can cause gut inflammation?
Some of the common causes are:

• Drugs: Antibiotics, Steroid drugs, Birth control pills, Chemotherapeutic agents, etc.
• Diet: refined sugar and flour, processed foods, chemical food additives such as artificial colours and flavours, alcohol (including, beer and wine), soda pop and caffeine act on the body like toxins. 
• Nutrient deficiency: If your body doesn't absorb the  nutrients properly, it creates a nutrient deficiency. So absorbing Zinc, Vitamin B6, Vitamin A, and glutamine is important because they are essential nutrients for maintaining the intestinal wall integrity.
• Microorganisms and Free Radicals: parasites, bacteria, mold, mycotoxins.
• Various Diseases and Disorders: Inflammatory conditions of the intestines such as Crohn's Disease, colitis, celiac, and pancreatitis. Other diseases such as:  HIV/AIDS, Candidiasis, Cancers of the gastro-intestinal tract, Food Allergies, ect.
• Lifestyle: A high-stress lifestyle and smoking (nicotine).

What medications were giving to Tommy while in the hospital?

When I made this question to my self, I went to Tommy's medical binder and I read everything about the medications were given to him, including the smallest printed letters. Two medications called my attention Azithromycin (antibiotic)  and Prednisolone (steroid), they are commonly used for treating upper airway infections. Both medications have the following side effects in common:


Muscle Weakness. The lost of muscle strength was very evident at the hospital and I even asked for physical therapy while he was at the hospital, we all thought it was due to the lack of physical activity that usually happen after being in bed for many days. Tommy couldn't sit for days, after he could sit on his own, he couldn't walk. So his muscle weakness was shown right at the hospital. But we realized how bad it was when we came home that he couldn't go up the stairs holding the real. Tommy's motor regressions were very evident the day he came back from the hospital on February 2, 2011. We kept giving his the same medications for about 2 more weeks by the doctors recommendation.


Gut issues, other side effect that pop up to my eyes. Which is what we have seen progressly happening after the hospitalization. According to the document given to us about the medications, symtoms of gut issues can appear even months later after being on the medication. 


Remember, Tommy never had antibiotics before until he was hospitalized. Because of the high risk of him getting pneumonia; Doctors did what they have to do, no question about it. But  there is not doubt that the antibiotics killed any bacteria in his body, including the good bacteria that support the gut to work properly. This is becoming an issues in the medical community and Dr. Michael in the video below explains this issue.

The same information is ratified by the Pharmacist Sherry Torkos

The poor guy was on these medications for a long period of time. So the possibilities he has a reaction to these medications are high. In the other hand, according to scientist research, people with Trisomy 21 don't absorb nutrients properly —this is the reason the are two labs creating special vitamins for kids with T21 to address thier nutritional needs. So Tommy gut inflammation, in my opinion, probably it may be a combination of a reaction to the medications and the extra genetic material.


Why did my son's gut get so much affected?
There are two reasons why his gut could go so affected. The first reason is that my son's wasn't eating or drinking while he was hospitalized, he was getting intravenous therapy (IV); so, he wasn't getting any type of food that could coat the stomach and intestines walls, while he was getting the antibiotics through the IV. The second reason is that he was in an antibiotic for a long period of time. He was getting the antibiotic and steroid at the hospital and for about two more weeks after he left the hospital. Tommy never before had any type of antibiotics, so the possibilities he has a reaction to the medication is high.


Did Tommy has some symptoms his gut wasn't properly working after the hospitalization?
Yes, he had loose bowl a few weeks and months after the hospitalization, and this has been one on and off until recently when we started a nutritional intervention. A rash (eczema) also appeared on his face around October 2011. A week after we started the nutritional intervention, the rash began to improve. Currently, it is almost gone.

Why gut issues can affect the brain or vice versa?

I think before understanding how gut issues can lead to sensory issues, we should understand when the gut doesn't process the food properly affects the brain functionality. I am not a Dr., so I am not an expert on these matter, but I found a good explanation in the article "The Gut-brain connection" in the Harvard Health Publication, which is published by Harvard Medical School:

"The brain has a direct effect on the stomach. For example, the very thought of eating can release the stomach’s juices before food gets there. This connection goes both ways. A troubled intestine can send signals to the brain, just as a troubled brain can send signals to the gut. Therefore, a person’s stomach or intestinal distress can be the causeor the product of anxiety, stress, or depression. That’s because the brain and the gastrointestinal (GI) system are intimately connected — so intimately that they should be viewed as one system..."

Why gut issues are linked to sensory issues?

Because of the Brain-Gut Connection. According to Timothy Buie, MD - pediatric gastroenterologist: 

• Every known neurotransmitter present in the brain is present in the gut. 
• The gut has independent mechanisms from the brain to regulate actions [enteric nervous system ENS]

Neurotransmitters are biochemicals that transmit signals from one neuron to the other, and then, to the rest of the Central Nervous System and the body. If the gut (intestines) doesn't work properly due to inflammation, this cause a biochemical unbalance because the inability of the gut to absorb all the nutrients that the body and brain need to function properly. According to Nutratest Lab, neurotransmitters are major players in brain chemistry. Neurotransmitters help us think and process the world around us. They can make us depressed, anxious or angry if they are unbalanced. They are critical to our emotional and mental well being.

We know Tommy had some type of sensory issues previous to the hospitalization, but they were not affecting him so much. Unfortunatley, the whole hospitalization experience affected him more than we imagined. I also think there is high possibility that him loosing the cervical curve happened at the hospital, which made the whole situation worse. What happen to Tommy was like a chain reaction, so his entire sensory system got disorganized.

How do I feel after founding answers?
"I feel a relief and a guilt." I feel a relief because everything about what I was observing on my son's muscle weakness and worsen of his sensory issues and regressions make senses to me now. I wasn't crazy! I am glad I don't believe in stereotypes, instead I believe in my son, so I can be a good advocate for him. I am glad my mother instinct didn't fail. In the other hand, I feel a guilt for not reading the notes that came with the prescription drugs when my son was relief from the hospital. This notes inform about the medications side effects. If I would know about it right after Tommy was realized from the hospital, we would immediately have him in the right treatment rather than waiting almost a year. Unfortunately, the cure affected him more than what the doctors and we expected.


At some point Doctors, Scientist, pharmacist and Parents will have to sit and talk about antibiotics. It should be medical preventive guidance for patients about what to do after a person is treated with antibiotic for a long period of time. Doctors are busy, so I think not everything should be let on their side; therefore, as petients, we should ask for more information about drugs that are prescribed and their side effects; then, we can have more control over our own health. I learned a lesson!


What will we do if Tommy have to be hospitalized again?
I pray for this doesn't happen again. It is hard to think about it because the time he was there, it was a torture for us. After a year, we still struggle remembering the 13 days he was there.  And after the hospitalization, it has taken time for Tommy to be the child he was. 


If this happens again, I will request Physical therapy, Occupational therapy and Music Therapy. As well as, checking any medication side effect previous to give it to him. 


As prevention, I am looking into getting a DNA testing because this have made me realized Tommy and Francis can have sensitivity to certain medicines like me. Since I was a child, I have had reactions to medications. Talking to other parents with kids with T21, it seems reactions to medications are more common in our kids. I know allergy or sensitivity to drugs can be life threatening, so I feel a relief I found a DNA test that will find the medications that can be dangerous for me, as well as, checking for Tommy's high risk to drug sensitivity. I will also test Francis for my piece of mind.


Meanwhile, we are following the recommendations by the Down Syndrome Center. They suggested we report these two medications as allergy, so he won't get them again. 


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Resource for parents:
One of my favorite well known nutritionist is Kelly Dorfman. She wrote the article "Preventing Sensory Processing Disorders." Click here to read the article.

Rescuing my son: Checking the spinal cord alignment

"The spine is the route that the majority of the messages from the brain travel to any other part of the body. The brain over sees the operation of all the activities that go on throughout the body. Most of the functions of the brain are carried out without consciously thinking about them. These messages are sent throughout the body using nerves that run from the top of the head to the tips of the toes,  this what is known as the nervous system. The nervous system is responsible for sending messages throughout the body back and forth from the brain. The majority of these messages go through a long bundle of nerves called the spinal cord, which is protected by your spine. If the spine becomes misaligned, the nerves inside the spine can become pinched and may have difficulty relaying vital messages to and from the brain."

Tommy's spinal cord was studied by a Pediatric Chiropractor Specialist, who has experience working with kids with kids with different needs and abilities.  The spinal cord study was done using a thermal scan and a x-ray. Both, the x-ray and the thermal scam showed something wasn't right with Tommy's neck.  The x-ray showed the neck didn't have the cervical curve. The thermal scan showed a severe inflammation in his neck. The neck's misalignment was making the neck muscles very rigid and causing a lot of inflammation in the neck area. This means Tommy had a neck injury. This misalignment resulted in moving his head forward, which caused lost of balance; poor growth due to the pressure over the pituitary gland. When there is an neck injury, as Tommy's, the pressure and misalignment in the neck can also affect the proper performance of the oral and vision muscles, as well as, sensory issues. When the neck get straight is called Cervical Kyphosis.


Misalignment on the spinal cord hasn't been rule out of the possible cause of my son's muscle weakness and worsen of sensory issues. 


What could cause Tommy's neck Cervical Kyphosis?
We won't know, for sure, how it happened. But I made a little research online and the first page that pup-up was About.com which mentioned the causes of Cervical Kyphosis. Those are:

• The wear and tear of degenerative disks weakens the vertebra whose job it is to hold up the head. Over time this causes the head position to move forward. This in turn causes the normal lordotic curve in the neck to be lost. The result is that the neck begins to straighten.
• Inherited congenital diseases and conditions
• Traumatic injury, such as whiplash, compression fracture, or iatrogenic injury.
• Infection
• Systemic diseases, such as osteoporosis

The highlighted words called my attention. Tommy has a congenital condition that cause low muscle tone and loose joints. An iatrogenic injury could be possible due to the rough movements during Tommy's fights against the nurses in the hospital to keep the oxygen mask on his nose (they had to do it), this has been the only experience I can recall he had a lot pressure on the area of his head and neck. Tommy was hospitalized because of a respiratory infection. Ironically, three of the fives causes got together while my son was hospitalized.

Care of my son's spinal cord

As soon as, we know Tommy's neck injury we started treatment. But before starting treatment, we talked to Dr. W. Hamed about our concerns of Tommy having AAI (atlanto-axis instability). She was very familiar with AAI and how make the alignment without doing a neck rotation. Many are skeptical about Chiropractors, but I personally didn't have any formed conception about a chiropractor before taking Tommy to see one. According to my personal experience, our chiropractor has helped Tommy to get a better connection between the brain and the nervous system. Our chiropractor found something wrong in the C1, C2 and C3 vertebras in the x-ray that the neurosurgeon didn't. Why? The neurosurgeon just focused on the gap between the vertebras, but not how the vertebras were located on top of each other and the neck cervical curve. 


My son's spinal cord adjustment has required techniques done by a professional Chiropractor, supported by the latest technology in chiropractic treatment, as well as, advanced chiropractic methods based on latest science research. During the treatment, it has been recommended to avoid pressure in his neck and the use of a therapeutic pillow or not pillow at all. So my son's spinal core has been professionally treated with amazing results. 

Tommy's cervical curve before treatment was 11°, 

you can see how straight his neck was.

 After 5 months of intensive treatment, 

Currently, Tommy's neck cervical curve is 35°. 

We will continue treatment twice a months

 for 3 more months. The goal is that Tommy's neck 

will be completely aligned in 3 months. 

And after this, the adjustment will decrease once a months

 to maintain the alignment. 

According to About.com website,"Researchers found that patients with curves of 20 degrees or less experienced neck pain associated with the condition." Ironically,  this is something I was observing. Because Tommy can not express what he feels, his behaviors were telling me he was in pain. I even commented several times he was in pain because he used to lay down on the floor without moving, I think this was helping him to relief the pain.


Talking to one of Tommy's caregivers, she mentioned that she remembers that Tommy used to keep his head forward. And we both remember he used to wiggle while he was in a standing position. I am glad other person noticed what I did. I wasn't crazy, something wasn't right with my son. 


Progress
3 months after treatment, Tommy's balance showed improvement. Tommy began to growth and he began to be happy and silly as he used to be. Currently, the Sensory symptoms are beginning to decrease. But there is a lot of more to do to help him to overcome his sensory processing issues. But we are excited for seeing him happy again.  


Recommendation for parents
If your child has low muscle tone and/or loose joints, you should AVOID to put your child to sleep with PILLOWS. The pillows keep the neck curve to the opposite way of the neck natural curve. If there is not a therapeutic pillow is better that the child sleeps on a flat surface. We chose for sleeping without pillow to help Tommy to get the cervical curve again. 

Rescuing my son: Testing for food allergy/Sensitivity

Taking Tommy to the Sensory Processing Specialized Center  has played an important role in rescuing my son. The therapists in this place are so passionate about helping kids to overcome their challenges. Miss C., the Occupational Therapist that was assigned to Tommy, was the one who suggested a food allergy test because Tommy was having some type of food allergy. She was very encouraging that we should take Tommy for the test because Tommy had a rash around his mouth and wasn't getting better  —I tried what our pediatrician recommended, but it didn't work. Miss C. told me that she has seen a very similar rash before and it has been due to food allergies. I was looking for an aswer to what happened to Tommy while he was hospitalized. The only allergy test we didn't have was a food allergy, so one more test wouldn't hurt.


We schedule an appoitmnet with the *nutritionist, at the Chiropractic Center, Miss C. recommended to us. We had he appointment on December 2011. During the appointment, I explained everything I was concerned; and for the first time, I felt someone understood me. All the changes on my son had a reason and was not just 'because' it is the way he is due to his genetic disorder, as I was told by a **Doctor. The nutritionist, who is also a chiropractor, checked Tommy's skin. She noticed some eczema on his body, beside rash aound his mouth. She also find little bumps around his elbows, which are signs of possible toxin in his body. She made questions about Tommy's diet and his overall health. After our conversation, she suggested an individualized nutritional intervention, as an action plan, based on my son's nutritional needs and suggested further testing.


Action Plan

1. Supplement. Because of my son genetic disorder and Sensory Processing Disorder (SPD) supplementation has been recommended and added to his daily diet. Vitamin Suplement designed for the nutritional needs for people with Trisomy 21 (T21).  Increasing the inteak of fish oil by supplement and eating fish once a week, as well as, DMG and Vitamin B12, which are recomemnded for kids with sensory behaviors. Vitamin D3 and EGCG are also supplements added to my son's diet. If your child is already taking supplements, bring a list of the supplements and the dosage to the first appointment with your nutritionist. I have found easier for me to do the supplementation with the guidance of the nutritionist. 
2. Blood work. The first blood test recommended by our Nutritionist was E95 Basic food Panel. This test for food allergy or sensitivity to food (always ask for a copy of the test results to keep in your records). It may not be easy to find a healthcare provider that knows about the food sensivitity test. In our case, we worked directly with the nutritionist and sent a copy of the test results to our pediatrician. The lab did the test was 
   Meridian Valley Lab (425-271-8689) and according to their website:
   

   "Diagnosis of Food Allergy Obviously immediate food reaction can be identified easily. However, delayed food reactions are much more difficult to diagnose. According to recent research, IgE antibodies cause immediate food reactions. Delayed food reactions are often associated with IgG4, a subclass of the whole IgG molecule. At Meridian Valley Laboratory, our food allergy test uses a combination IgE and IgG4 protocol. The test can detect both IgE and/or IgG4 allergic reactions. Thus both immediate and delayed food reactions can be detected...
   The E-95 panel contains 95 foods in a wide variety of categories, including milk, cheese, egg, fish, seafood, grains, fruits and vegetables. The A-95 panel contains 95 additional fruits, nuts, vegetables and spices. 2 ml serum is required for these panels. It can be sent via regular first class mail using our prepaid mailer. Specimen collection kits are available."

   If you suspect your child has food allergy or sensitivity causing sensory issues, you should ask your pediatrician if the E95 Basic Food Panel can be done at their office (or their lab), so you can order the test kit and be sent to their office. The pediatrician then processes it and overnights it back to Meridian Valley laboratory.
3. Test Results.  In my son's case, the results of the E95 Basic Food Panel came back POSITIVE for food sensitivity. Tommy has high sensitivity to beef, milk, dairy products, and peanut. He has to completely avoid these foods. He also has food sensitivity to whole egg, lamb, gliadin, gluten, rye, wheat, red shapper, almond and soybeans. While doing my search, I found out that there are kids with an even higher number of food sensitivity; therefore, a food test panel is highly recommended as a start point to decrease the sensory symptoms or behaviors on a child.
4. Elimination of Food. The food the child shows allergy or sensitivity has to be eliminated from his or her diet. In our son's case, it has been eliminated becasue the food sensititivity is an indication his gut it is inflamed and worsen of his sensory issues, which means is not breaking down the nutrients as it should be. So he is in the GFCF diet and the feingold diet recommended for kids with sensory issues. It may take weeks for the family to get adjusted to the child's new diet, but it is worthed.

Food sensitivity has not been rule out as a cause of our son's sensory issues worsen. So nutritional intervention has been recommended to decreasing sensory issues or behaviors.

I believe that groceries store owners have realized that the nurmbers of kids and adults having alergy or food sensitivity are dramaticly increasing; so you may check in your local grocery stores first, if they have an organic alie where you can get some of the food you need for you child's diet.  In our son case, we found out that our local stores had an organic alie, so we can get some of the food he can eat when we run out of groceries for him. We highly recommend Wholefood Market because they have a large variety of organic and healthy food for people with sensitivity or allergy to food. The best of all, they have stores located nationwide, which make things easier when you are planning a family vacation. 

Next Step
Now, there are BIG questions: What did cause all the food sensitivity ? Why food allergies or sensitivity are linked to sensory issues? and What did cause his muscle weakness? To find answers I went back to Tommy's medical records. I find the answer, the root of what caused all this chaos in my son's development.  It is becoming a health issues of our modern age; therefore, as my son's advocate, I have to talk about it. Please keep visiting my blog to know the answer.


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*Resource for Parents:
Finding a nutritionist may not be easy, specially, if you are looking for one that specialiased in kids with sensory issues or other diagnosis. In my search, I found Kelly Dorfman, a detective nutritionist who specialiazed in kids with developmental delays. She does appointment via phone, so not matter where you life, she may make an appointment. I am planning to work with her in the future due to she has experience in nutrition for kids with hypotonia (low muscle tone). Due to son's muscle weakness getting worse after the hospitalization, I am concern this may happen again. Her contact information is:

Kelly Dorfman, M.S., L.N.D.

10828 Tuckahoe Way, North Potomac, MD 20878

Website: KellyDorfman.com 

Book:  www.whatseatingyourchild.com

Email: Kelly@KellyDorfman.com

Phone (Office) 301-340-2239

Other websites, I have found helpful are: www.gfcfdiet.com and www.feingold.org I have to highlight: these diets are not specific for people with autism. The nutritional intervention research has been done for kids with T21, but parents of kids with Autism has incorporated these nutritional interventions as a way to treat their kids, having great progress on healing their kids. Any person with sensory issues benefit from these diets. Many families with kids in an entire range of developmental disorders and learning disabilities has reported benefits or progress after the nutritional intervention.


I will also recommended the book "Down syndrome and Vitamin Therapy"book. You you can ask for a complementary copy or download a PDF version at nutrichem.com


**A few words to Parents:
BE STRONG! BELIEVE IN YOUR CHILD'S POTENTIAL REGARDLESS HIS OR HER DIAGNOSIS. There is no one better than you who knows your child. If your mother or father's instincts are telling you that something is not right with your child, FIND ANSWERS! This will let you free of worries and you will find the right treatment for your child.


When I noticed something wasn't right with Tommy, I began to talk to many people as I could. People were supportive and comforted me by saying: "It will time more time for him to recover" or "it is something to expect," one doctor tried to make me see "reality" according to his narrow spectrum, but one person linked me to the answer I was looking for. Nothing could take away the strong feeling in my heart, something wasn't right with Tommy.  I have test results and I can firmly say: I WAS RIGHT! SOMETHING WASN'T RIGHT WITH MY SON! 

Rescuing my son: Testing for Sleep Apnea

On August 2011, I started my journey to find answers to what happened to my son while he was hospitalized on January 2011. So I began to talk with Tommy's ENT. She suggested to do a sleep study to find if he had sleep apnea. Sleep apnea causes sensory issues and kids with Trisomy 21 are at a higher risk for sleep apnea. So I contacted the Down Syndrome Center and they order the sleep study. The sleep study was schedule on November 13, 2011.


Understanding what is Obstructive Sleep Apnea
According to the organization Sleep for kids, "when snoring is loud and the child is having difficulty breathing, it may be a sign of a more serious disorder, obstructive sleep apnea.  Sleep apnea is characterized by pauses in breathing during sleep caused by blocked airway passages, resulting in repeated arousals from sleep.  Sleep apnea has been associated with daytime sleepiness, academic problems, and hyperactivity.  Treatment for sleep apnea is available."


The date arrive
We got admited to the hospital at 7:30 pm. I was a little concerned that it would bring bad memories to Tommy and he wouldn't cooperate. I did everything it was recommended by the Neurologist division to make our experience more placent. So I brought Tommy's favorite blanket,  favorite pajamas, his best friend "Elmo" and so on. The same day, Tommy had his first cold for the fall/winter season; therefore, I had to bring his *asthma treatment, too.


Getting ready to the sleep study
It took a little while because the wiring it had to be placed on Tommy's head, chest and back. Tommy was playful and cooperative with the technicians, completely opposite of what I was expecting.  We were ready to go to bed at 8:30 pm and the lights went off! The sleep study began:

Sleep Study 
Time in bed: 9.1 hours
Total Sleep: time 7.8  hours
Sleep Efficiency 85.6 %
REM Sleep: 19.2 % TST
Average Oxigen Saturation: 94%


Waking up
Tommy fell asleep at the same time than usual, but he didn't sleep the amount of time he usually sleep at home. He began waking up when the technicians had to come to the room to check on the wires. He couldn't sleep after 4 am, when he usually sleeps until 6:30 am.

He is lucky for having a beautiful hair.

After the wires were removed, a quick bath

was enough for his hair being shinny again.

Sleep Study results
"Slept restlessly but hand only a very slight increase in the frequency of obstructive events. Normal sleep quality with much (RMEM3) and REM sleep... Snoring was rare and mild..."


We are very happy with the results of Tommy's sleep study, considering he had a cold and was congested that day. His results also reaffirm to me what The National Association for Child Development has in their website about sleep apnea in kids with T21: "It has been said by some experts that 100% of children with DS have sleep apnea. But studies have shown that this is not the case. While the numbers are fairly high at 45%, not all children with DS suffer from OSA (Obstructive Sleep Apnea)." I can say, according to my son's sleep study results, "Not all kids wit Trisomy 21 has sleep apnea. Their percentages for having sleep apnea is higher than for their typical peers, which means monitoring sleep apnea should be recommended, but it doesn't mean your kid will have it."


Sleep apnea has been ruled out as a possible cause of our son's sensory processing issues.


Resource for parents:
The organization Sleep for kids is a service of the National Sleep Foundation. Their website has good information that  explain everything, we as parents can do, to help our kids having good sleep habits. 




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*Because Tommy has viral asthma, a simple cold can trigger his asthma. But the whole fall/winter season Tommy hasn't have any asthma episode. Just running nose and sporadic cough when he has had a cold, no wheezing. So he may be growing out of the asthma. We will know for sure in his next appointment in May.

Rescuing my son: Ruling out the possible cause

Getting  the diagnosis for Sensory Processing Disorder is one more label we have to deal with; but at the same time, it was the first step for me to find an answer to what happened to my son while he was hospitalized.  I have also realized this label  helps to get grants from non-profit organizations and services through the school districts. The way I see it:  the better you know your enemy's strategies, the better you can contra attack. So this label helps me to fight back for my son in our chromosomal war. 


Sensory Processing Disorder  does share many symptoms with several other disorders, and many times kids are misdiagnosed with autism. Therefore, It is important for parents to rule out any other possible causes of the child's symptoms. To rule out the causes of my son's regressions and worsen of his sensory issues, I worked in conjunction with a Chriropractor, a Nutritionist and the local Down Syndrome Clinic. We checked several areas:

• Spine Cord alignment. Spinal cord is the highway to pass sensory information from the brain to the body. If there is a misalignment the pathways between the brain and the rest of the body, the sensory information received  from the sensory system is not decoded properly from the brain; therefore, wrong information is sent to the body, resulting in inappropriate behaviors from the person.  Checking the spinal cord aligment of a child should be done for a Pediatric Chiropractor Specialist. In our son's case, we found a Chiropractor with experience in kids with different needs. 
• Sleep apnea. Sleep apnea is linked with sensory disfunction because the brain doesn't get enough oxygen. Sleep apnea is common in kids with Trisomy 21. An ENT or a local Down Syndrome Clinic can get a referral for a sleep study to check for Sleep apnea.
• Allergies or sensitivity to food. Food allergy/sensitivity Signs that a child may show are constantly picking at his nose or a rash around the mouth, which can be confused with chapty skin because of cold weather.  Blood work should be done to determinate if the gut is processing foods properly. This is a blood work, and insurance may not cover for this test. The test  E95 Basic Food Panel (Ig3 and Ig4) test 95 foods, so it allows to have a wide spectrum of food should be avoid it the test comes back positive for food sensitivity. The specialist who can help in this matter is a Nutritionist who specialized in AHDD/ADD/ SPD.
• Antlanto-axial Instability. The neurologic manifestations of symptomatic AAI include, but not limited to, Loss of muscle strength and sensory deficits. Because kids with Down syndrome have a higher riks for AAI, it is important to check as a possible factor of the sensory issues. A Neurosurgeon or Orthopedic surgeon are the specialist who can dignosed AAI. A local Down Syndrome Clinic can get a referral for a Neurosurgeon or Orthopedic surgeon.
• Nervous system test.  The nervous system is responsible for every activity in the body. Therefore, a biochemical imbalance can affect the nervous systems. The test is done with saliva or urine samples. A NeuroReset™ Program is a medical program that uses Neuro Science for a unique Assess and Address™ approach to create a person customized health protocol. A nutritionist, speicaliased in AHDD/ADD/SPD, is the professional can help to find if there is a biochemical imbalance in your child's brain.

The areas we checked were based on my son's genetic disorder, Trisomy 21, and SPD. I shared the areas we looked into it to rule out the possible cause because when I was desperred looking for help, I didn't find a guide where to star. In my following post, I will give detail information about the studies, tests and the results that linked us to the answer that I was desperately looking for.

A few words to parents:
SENSORY PROCESSING DISFUNCTION STOPS DEVELOPMENT. If your child is already developmentally challenged this will interfere in your child reaching his full potential and achiving his or her IEP goals will be even harder. Ruling out the cause, it is crusial to find the right treatment for your child. 

Rescuing our son: Checking for Atanto-axial instability (AAI) —Neck X-ray

By the end of August last year, I began to feel more and more uncomfortable because of Tommy's regression. Something wasn't right! I had to find out the cause to fix the problem. So I contacted our local Down Syndrome Center. They checked his chart and the only possibility they found was: Atlanto-axial instability (AAI). The x-rays he had last year show he had a borderline for AAI, so his regressions in his gross motor skills and overall muscle weakness showed after the hospitalization may be linked to AAI.


What is Atlanto-axial instability (AAI)?

"According to MedScape Atlantoaxial instability (AAI) is characterized by excessive movement at the junction between the atlas (C1) and axis (C2) as a result of either a bony or ligamentous abnormality. Neurologic symptoms occur when the spinal cord is involved. The causes of AAI are varied. AAI sometimes results from trauma. Other cases occur secondary to an upper respiratory infection or infection following head and neck surgery. Another cause is rheumatoid arthritis (RA), with its predilection for the upper cervical spine. In addition, congenital anomalies, syndromes, or metabolic diseases can increase the risk of AAI."

What are the symptoms?

AAI could be asymptomatic. According to the National Down Syndrome Congress, "The 13-14% of individuals who have asymptomatic atlanto-axial instability require no special medical or surgical treatment. However, these individuals may want to avoid activities that may put extra strain on the neck. High risk activities include gymnastics (especially tumbling and trampoline), diving, swimming the butterfly stroke, high jump, soccer, and collision sports (such as football). Individuals with asymptomatic AAI should have more frequent medical and x-ray follow-up. For the 1-2% of individuals with symptomatic atlanto-axial instability, surgical stabilization of the vertebrae is necessary. Such surgery should be performed by a neurosurgeon or orthopedic surgeon who is familiar with Down syndrome and who has experience treating atlanto-axial instability."

Do the neck x-rays diagnose Atlanto-axial instability (AAI)?

No, the neck x-rays are a screening and they are not 100% accurate. An MRI is necessary to diagnose AAI. According the the National Down Syndrome Congress, the "Screening for AAI involves both x-rays and physical examination. The physical examination looks for any changes that might suggest pressure on the spinal cord. X-rays of the head and neck are taken from the side (lateral view) with the head in a normal position as well as with the head bent forward (flexed) and tilted back (extended)." 


A space between parts of the first and second cervical vertebrae (atlanto-dens space) of 3 millimeters is considered normal.  The space between 4 and 5 millimeters is considered borderline and more than 5 millimeters is considered suggestive of atlanto-axial instability.

My husband took Tommy to the radiology appointment in Feb. 2011. My husband commented that the technician said that the films may be wrong because Tommy was moving. The results showed that Tommy's atlanto-dens space was borderline. So Down Syndrome Clinic suggested to repeat the x-rays this year.

If some how the regressions would be linked to the AAI, it may due to Tommy's fights against the nurses due to the pressure in his face and neck to keep the oxygen mask on. I didn't know how strong Tommy's was until I saw him fighting back against 4 nurses. So they did what they had to do to keep him breathing. If the AAI got worse because of the fights during the hospitalization and his regressions were symptoms of AAI, the next step may be surgery. So once again, I got armed with courage and got *plan "B" while I was waiting for the appointment on January 11, 2012.


We had to wait about 3 months for  a neurosurgeon see Tommy. Finally, the day for the appointment arrived. we went to  the appointment, but  the neurosurgeon felt he didn't have enough experience with kids who have Trisomy 21. So Tommy was recommended to a other doctor in the Neurologist Division and he restricted Tommy from any activity that could cause rough movement in his neck until the new doctor saw him. We got the next appointment for February 7. It means today! I am glad to say Tommy is out of any risk. The x-rays showed his AAI is 3mm, completely in the normal range. The Neurosurgeon also asked questions about his regressions in the are of motor and we are glad to say Tommy's muscle weakness has improved as well as his balance, very close to were he was before. So new x-rays won't be necessary until he gets older. The current recommendation is every 10 years. So AAI has been ruled out from the list as a possible cause of his regressions and worse his sensory issues. 

Why surgery is the option for symptomatic atlanto-axial instability?

Surgery is recommended because the person can get paralyzed for the rest of his or her life or can die. So there is not doubt in my heart if symptomatic AAI comes across in our journey, I will everything for my son having the surgery. A low percentage of a people with T21 experiencing  AAI need the surgery, but the risk is higher for them than for their typical peers.  A lot of kids with T21 experiencing asymptomatic AAI grow out of it. 

I have to thanks Tommy's teacher, therapists, extended care staffs and everybody at Tommy's Preschool and Day care for caring so much about him when they knew about the possibilities of having symptomatic AAI. They were doing everything they could to keep him safe. This make feel confident to let my precious boy under their care while I am working. Thanks so much! 

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*PLAN B

If my son would have needed the surgery, I wanted the best for him. This means the best surgeon, the best hospital. So I contacted a blogger friend "myspecialks.com." She gave me good information if my son would need surgery. So I want to share it with all parents with a child facing symptomatic AAI:
Shriner's Hospital for Children in Philadelphia has top spine surgeons in the country. One of the best surgeon for AAI is Dr. Amer Samdani, he is currently working in open a AAI clinic. You can contact Dr. Samdani at:

Shriner's Hospital for Children

3551 North Broad Street, 

Philadelphia, PA 19140 

(215) 430-4000. 

Because of the health care of a child with a genetic disorder requires money, we always are worried about medical bills. Shriner's Hospital for Children doesn't reject any patient because of money. Shriner's Hospital for Children pays for all travel and all medical care. I didn't get more information how to apply for them to pay for the medical bills, but it is a great relief to know about it.